Category: Medical

“Chronic Lyme is something doctors say to take advantage of their patients.”

“If you had Lyme, you would have the antibodies and would be able to tell from your white count.”

These are all comments I’ve been met with when I’ve asked about Chronic Lyme Disease to doctors I’ve seen in the past. A couple of years ago my primary care doctor ran an ELISA test to appease me and lo and behold, it was negative. This isn’t too surprising as that test is known to be very inaccurate and misses about 60% of Lyme cases.

Over the years I’ve been given several disjointed diagnoses for the symptoms that have cropped up all over my body. The constant headache was NDPH, the low blood pressure, chest pain, heart palpitations, PVCs, and pre-syncope was POTS, the weight loss and nausea was labeled idiopathic when all of my test came back clean, the blue fingers and toes were idiopathic Raynaud’s disease, the debilitating fatigue was Chronic Fatigue Syndrome… None of these things were tied together though and there was never an underlying cause found. While the diagnoses themselves are probably accurate, I couldn’t accept that they all just happened out of the blue with no connection. So the research continued.

I had come across Chronic Lyme in the past but because it is so difficult to get properly diagnosed, I decided to knock out the easier possibilities that insurance would cover first. I was treated aggressively for NDPH (the most debilitating of all of my issues) but despite six hospital admissions, countless drugs, and a neurostimulator implant, I am still not well enough to return to working. You see, the CDC does not admit that Chronic Lyme is a real disease. They use the term “Post Treatment Lyme Disease Syndrome” and argue that 2-4 weeks of antibiotics is curative of Lyme and that sometimes the symptoms just persist but there is nothing to do about it. This means that insurance companies do not have to approve any Chronic Lyme treatment, making this a very expensive disease to manage because so much of it is out of pocket. This is also why there are so few physicians who will treat it. There are only three Lyme specialists in the state of Indiana.

When my long awaited admission for a 5-7 day Lidocaine infusion was not approved by insurance, I decided to chase down the question that has always been in the back of my mind. The more I learned about Chronic Lyme, the more I became convinced that it was the answer. Not only did it explain my current symptoms but it also explains so much of my milder issues I dealt with in high school. I reached out to the International Lyme and Associated Diseases Society for help in finding a Lyme literate doctor in state. The first LLMD was right here in my town but is so overwhelmed, she cannot accept any new patients. The second phone call I made was to the doc about two hours away from me. She was also swamped and would not be accepting new patients until the end of August and would be scheduling those new patients for October or later appointments. Finally on the third phone call to a specialist three hours north, I had the orders for the more accurate test along with a test for a co-infection called Babesia.

One week later on August 21st I got the call to say that I did indeed have Lyme and Babesia. As strange as it sounds, my family, friends, and I were thrilled! When you have lived with a mysterious illness for so long and watched as everything that makes your life yours crumble away with no way to stop it, finding a name for that demon is like Christmas morning! Now that it has been named, we can better know how to fight it and hopefully achieve remission.

Chronic Lyme Disease is difficult to treat because the bacteria is so smart. It can exist in the body in the form of spirochetes, cystic bodies, and biofilms. The co-infections make treatment even more complicated and while I have been tested for one, I have several symptoms of another called Bartonella. So much of the treatment is holistic, meaning there are a lot of diet changes and supplements which are all out of pocket expenses making it a very costly disease.

This is just the beginning of a difficult battle ahead as treatment can be brutal but it is a battle I’m so ready to take on. Finding a diagnosis has been so helpful mentally and emotionally because now I know that no matter what any doctor has said to me in the past, I am not overly dramatic. I am not a drug or attention seeker. I am just a girl who knows her body and refused to give up on finding an answer.

Today I was thinking about just how much thinking I do all the time. I realized that I spend most of my time considering things that most people probably never give a second thought. I woke up today extra dizzy from low blood pressure caused by POTS (Postural Orthostatic Tachycardia Syndrome). I knew the best way to manage that was to drink lots of water and eat lots of salty snacks. That sounds simple enough, right? Unfortunately, POTS is not the only way my body fights me. I also had to gauge how much nausea/abdominal pain I was going to deal with today. If I go ahead and eat, is that going to make me too nauseated? Is my stomach going to bloat and be ridiculously uncomfortable? Is it going to cramp up and hurt? Then there was the catch-22 of needing to drink water to combat the dizziness, but drinking lots of water means needing the bathroom, and walking to the bathroom causing dizziness.

This is all just to manage one symptom of one issue. I also must juggle finding the settings on my stimulator to best control the head pain, judging how much energy I have for walking around and knowing where the next place to rest will be, taking meds on time, trying to think through the brain fog, not pushing too hard and causing joint and muscle pain to flare, deciding when to risk eating foods that have the potential to make me sick and when to play it safe… and this is just for my body. I also think about all the things everyone else juggles too like carrying on conversations, making sure my dog is taken care of, being where I need to be when I need to be there, and so on.

While my body is at rest a lot of the time these days, my mind is not. Its usually a whirlpool of thoughts and questions. The more practice I have living with these chronic curveballs my body likes to throw me, the better I get at managing them, but there are definitely time it gets overwhelming, and times when, no matter what I do, the best I can hope for is a better day tomorrow. That’s ok though because at the end of the day, that’s really what everyone is doing! My curveballs come in the form of my body rebelling but we all have things we must overcome. We just do our best in the moment and keep moving forward!

Hebrews 12:1-3 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us,fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God.Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.

On Thursday, July 27, I woke up alone for the last time in my hotel room and got myself prepped for another day of infusions. As much as I was dreading the drugged, sluggish, awful feeling of having so many medications pumped through my body, I was hopeful that they did seem to be helping manage the headache pain! I made sure to pack up my book and coloring book even though the visual side effects of the meds made looking at things difficult. Sometimes a girl gets desperate for some distractions.

I hopped in the back seat of my very friendly Uber driver’s car at about 7 am and tried to get myself fully awake during the commute. Once I made it to the office I had my usual meeting with the nurse practitioner and we went over the plan for the day. I again had low blood pressure and again declined the Benadryl infusion in hopes of being less groggy and mush brained. I had the same nurse in the infusion center which was nice although this time it took three tries to get an IV placed.

After the second unsuccessful stick, nurse Kristin brought out a fancy-shmancy tool that would shine a light on your skin and illuminate the blood vessels! It was the first time I had seen one in person and we both agreed it was a pretty nifty little contraption. We finally managed to get the IV taken care of and the infusions began with 30 minutes of Compazine followed by Zofran, DHE, Toradol, Magnesium, and more Compazine. Maybe more Zofran. Definitely more DHE. Anyway, it was a lot of stuff.

I tried to be more aware of what I was doing with my neck and made sure to stand up and stretch or walk around in the hopes of avoiding the same muscle side effects from the previous day. Unfortunately that was unsuccessful but more about that in a moment.

Mom got up in New York and said goodbye to her traveling buddies with Turner and opted to get a rental car and drive down to Philly rather than ride the bus back to Terre Haute. Thank goodness mom loves driving! She gets lots of hours logged on the road getting me where I need to go for all these medical appointments! We talked on the phone about an hour before my infusions were going to be done and I decided rather than getting an Uber back to the hotel, I would just wait in the city for her to get there and pick me up.

Once I left the infusion center I walked down to a Dunkin’ Donuts and got myself a coffee and waited for mom to get to the city. I don’t usually drink caffeine as it makes the chest pain more intense but desperate times call for desperate measures and I needed to stay awake! There were a lot of phone calls trying to coordinate me being on the correct corner at the time she would be driving by but we finally made connection and I hopped in the rental Camry with her. Philadelphia is not exactly the most fun place to drive – especially when you’re used to the roads in the Midwest that are wide enough to accommodate tractors! Mom is a trooper though and we finally made it back to the hotel.

We decided to just use Grub Hub again for dinner but an hour after placing our order at a nearby pizza restaurant, we got a call saying their delivery person had not shown up and asked us to cancel the order. We couldn’t find anywhere else that we wanted to order from and didn’t really want to wait longer for another delivery order so we found a little Italian place not too far away. We got the smallest pizza they had which was 14 inches and finished half of it between the two of us. We decided cold pizza for lunch in the car the next day sounded like a plan. Our standards for road food are clearly set quite high. (Insert sarcasm here)

This entire time I had been fighting the muscles in my neck cramping like they had the day before. Then the uncontrollable muscle weirdness went to my eyes and for some reason they would get stuck rolling to the back right side of my head. It was incredibly uncomfortable and admittedly kind of frightening. It was a bit like something else was controlling my eyes and no matter how hard I tried, I couldn’t get them to move where I wanted them to. There were a few tears shed out of frustration and fear but we decided that since sleep helped with the neck issue, we would hope for the same with my eyes and if it wasn’t better in the morning we’d call my doctor. Otherwise, our plan was to get on the road home in the morning.

Thankfully, I woke up with much more control over my eye movements and just left with extremely blurry vision which is a side effect of the medication I’ve dealt with before and I knew that would improve with time. We were up and out the door by 7 am and opted to drive home by way of Baltimore rather than have to drive through Philly again.

I was feeling the fatigue pretty hard but also feeling very restless (another side effect) so I got myself some caffeine riddled coffee with my breakfast croissant at our morning stop. They were terribly overpriced, albeit tasty, but we thought it was ok because we were having leftover pizza for lunch. The drive was, overall, uneventful and I am always thankful for the fact that all of the thousands of miles we’ve driven for my sake have all been safe ones.

As we were passing through, we stopped at my brother and sister-in-law’s house to pick up mom’s little dog, Moxie. We were lucky enough to arrive before my niece’s bedtime so we got to enjoy some entertainment courtesy of the cutest little curly blonde-headed child I know. Once in Terre Haute mom asked if I wanted to go to my house or stay at hers for the night. I opted for my house even though my car was still at my dad’s. We got all the way there and I was unloading my things when I realized I didn’t know where my keys were! I assumed I had left them in my car since I couldn’t find them in my backpack anywhere and because I had no spare house key, ended up staying with mom for the night after all. Spoiler alert: I found my keys the next morning in the one pocket of my backpack I never ever use and didn’t check! Oops!

While trip was definitely not what we expected and in some ways disappointing, I do believe it was worthwhile and have gotten some relief from the IV medication I was able to get. I am very grateful for any positive changes and also thankful for the POTS diagnosis. That is not to be confused with being grateful something is wrong necessarily, but it is nice to have a word that encompasses all of those symptoms rather than having to describe each one individually. It also helps my doctors figure out what course of treatment is most promising and gives me credibility as a patient because, yes, I am still not taken seriously in some arenas. I think the outcome of the trip was overall positive and we have scheduled the lidocaine infusion for mid-September. Until then I will be praying for favor with insurance, more good days to get me through, and reminding myself that while things may not make sense to me, there is a bigger, better plan than my own in place.

Isaiah 43:1 “But now, this is what the Lord says – he who created you, Jacob, he who formed you, Israel: ‘Do not fear, for I have redeemed you; I have summoned you by name, you are mine.'”

Dad and I woke up plenty early in order to pack up our things and head to the infusion center to be on time for my 7:30 am appointment. Our Uber got us there with time to spare and after a quick meeting with the nurse practitioner to check on vitals and discuss any last minute questions, I headed off to the infusion room. My very sweet nurse, Pandora, got an IV started and dad went off in search of some decent coffee while I began my infusion of Benadryl, Compazine, Zofran, DHE, Magnisium, and Toradol. All of these are medications I’ve had in the past but this time they were given together and at different rates than past experiences.

The Benadryl had me pretty worn out for a good while so dad was in and out of the infusion room while I slept. He left around 1 pm to head for the airport to catch his flight back home. I finished my infusions around 3 pm and I caught my own Uber to the hotel room I’d be staying in for the next few nights. Unfortunately when I arrived I was informed that the elevators were not working and were not expected to be functioning again for a few weeks. Not the most welcome news for someone who just spent hours having their body essentially assaulted with medications and who on a good day deals with intense fatigue and dysautonomia. Oh, my room was also on the third floor.

I managed to lug my bag and myself up the stairs and generated some laughs from the two men behind me because this healthy looking 24 year old woman was completely out of breath and feeling pretty faint after a short trip up the stairs but I was really too tired to care. I made it to the room and pretty much passed out for the rest of the evening. Dad made it home safely and I missed just enough texts and phone calls to accidentally cause concern. Oops!

I woke up on day four feeling worn out from the day before but thankfully more rested than when I got to the hotel. I got myself dressed and downstairs and called my ride for the morning. My day was much like the one before with a check in with the NP, comments on my low blood pressure, and then off to the infusion room. My nurse took a couple of tries getting my IV started which didn’t surprise me since DHE is a vasoconstrictor, which makes finding a good vein more difficult.

I opted to skip the Benadryl since I didn’t like being quite that groggy while having to stay awake and alert enough to safely transport myself between the office and hotel. The NP said that would be fine unless I started having side effects that required it. Thankfully that wasn’t an issue.

However, after this day of infusions, I did experience a really weird side effect of my neck muscles contracting uncontrollably. That meant that my head was stuck in a position like I was cradling a phone between my ear and shoulder and was really uncomfortable. I tried stretching but it didn’t really help. Thankfully a night of rest did do the trick and the following morning was much better in that regard.

I talked to mom from my hotel room and she caught me up on how her Niagara Falls trip had been going. I updated her on my surprise of just how much more difficult this all was than I expected. We both agreed that we were pretty excited to be reunited the following day! I fell in and out of sleep starting fairly early in the evening and prepared to do it all again in the morning!

Sunday morning, July 23rd, dad and I got up and ready to head to the airport. I got my Sophie dog packed up, my Glitter cat kissed and assured of my love, my living room as empty as possible for the flooring to be replaced while gone, and made a stop at the Sycamore Dog Estate before meeting up with dad and stowing my car. Our drive was grey and rainy but uneventful.

Thankfully the rain and lightning cleared before our first flight and pretty soon we were in Atlanta. After some airport lunch we boarded once again and touched down in Philadelphia at about 4:30. We found my bag at baggage claim and called the hotel to request the shuttle. We made it to the hotel where the man at the check in desk was rather confused about the separate reservations under the same last name (one for dad and me and one for mom when she joins me.) but we got it all figured out.

I was disappointed to learn that there was not complimentary wifi except in the public areas but we have been blessed with 4G on our cell phones so our grub hub order could still be placed. I know, first world problems are tough. Getting our dinner was a bit of a circus but we didn’t go to bed hungry so all was well in the end.

This morning, Monday, I called to confirm my 1 pm appointment and we caught an Uber to the city around 11 am. We walked around and found an ihop where I got breakfast and dad got lunch, and we met the slowest waitress I’ve ever seen in my life. Thankfully I had allowed us plenty of time so there wasn’t much worry about being late to check in for the appointment.

After sitting in the waiting room for about forty minutes I finally made it back to talk with my doctor. She was trying everything she could to get my insurance to approve my admission so that we could go ahead with the lidocaine infusion as planned but so far hadn’t been successful. After lengthy discussion of our options, we settled on a plan for me to come back at 7:30 tomorrow morning for outpatient infusions and pray that insurance calls back with good news. My vitals weren’t good enough for her to feel comfortable administering the medication she would have preferred without me being inpatient, but we will try some abortive IV medication to hopefully at least provide temporary relief while waiting out the insurance call. She was also rather appalled that no other doctor has talked to me about POTS (Postural Orthostatic Tachycardia Syndrome) before now because my symptoms point that direction and – SURPRISE – I have responded to the medication she gave me to control said symptoms. It’ s a form of autonomic dysfunction that is seen very commonly with NDPH. This means my body can’t regulate things like heart rate, blood pressure, and temperature the way it should.

We discussed my increased joint pain and issues with insomnia and she thinks that the joint pain spike could be a full body response to the recent Botox treatment I had and that the lidocaine infusion could be helpful for that. The idea of that infusion is to calm my central nervous system which is overly sensitized. However, that particular treatment comes with enough cardiac risk that in order to do it, I will need to be on a monitor 24/7, which is not something that can be done in an outpatient setting.

Tomorrow dad will fly back home and the plan for me to be at the hospital is very up in the air right now so I made myself further hotel reservations so that we can continue with the outpatient treatment. Mom is still planning on driving down to join me on Thursday and depending on insurance decisions will drive back home together at some point.

We’re all praying that things go our way and that I can have this infusion that I’ve been so hoping for for the past two months but keeping in mind that there is a plan in motion bigger than my own. I will be incredibly disappointed if the denial isn’t overturned but I’ve been keeping in mind Philippians 4:6-7 that says, “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.” Its really difficult to accept when what looks best to us is not what God has in mind for us, but thankfully, he is much better at directing my life than I am and so I will just do my best to trust that if the answer is “no”, its because something else, even better than what I can imagine, is in store.

I’ve decided I want to keep better documentation of my experiences these days. I’ve let myself completely stop documenting this period of my life because I’ve been thinking of it as more of a transition or waiting phase rather than my life that I’m actively participating in. Now I think that this is just life and be it the medical saga that it is, its mine and its up to me to not only survive it, but to embrace it and make the most of what I can! With that being said, I’m going to be documenting my medical journey more often on this blog as well as writing down my thoughts and opinions on other topics! So here goes… my first appointment at the Jefferson Headache Center…

Mom and I packed up to hit the road on Tuesday, May 23rd which also happens to be moms birthday. We weren’t able to do much celebrating because of the circumstances but she has never complained about the sacrifices she makes for my sake (well any of her children really). I think she deserves all the thanks in the world but that’s another subject altogether. We dropped my Sophie dog off at the Sycamore Dog Estate where she loves getting to spend time with her canine friends and running around to her little hearts content. Then it was me, mom, and Moxie eastbound and down with the goal of making it to the hotel room in time for the Dancing With the Stars finale that night. Moxie was an excellent traveling pup and provided plenty of smiles and “awww” moments along the way. We made it to the hotel just in time but the room kind of reminded me of something out of a horror movie… we had two nights reserved but packed our things in the morning and decided we’d find somewhere else for the next slumber.

Moms phone guided us to the right address fairly easily and once we parked and checked in I started working on the personality test all new patients take. I do think its complete garbage that the psych doctors choose not to work with insurance at all so it was nearly $500 out of pocket right off the bat for this test and a consult with the psychiatrist – both of which are required for all new patients. Anyway, we thanked God for the blessing of the ability to pay for it and moved on and hopefully insurance will reimburse the fee. While working on the personality test the nurse called me back to the exam room to take my vitals. Things were ok aside from having rather low blood pressure and of course still being underweight. She took a somewhat brief history and then sent me back out to continue filling in bubbles.

A little while later the psychiatrist called my name for my consult with him. He was super nice and very knowledgeable. He immediately put to rest any worries that they may be trying to “weed out” patients that are “attention seeking” or “just depressed” or anything of the sort and explained that rather, they want to treat the whole person and an important part of that is mental health as well as physical. I was very happy that he listened to what I said and despite my history with depression, he agreed that right now, any depression or anxiety is a normal response to chronic pain that is caused by the physical problems and not the other way around. He also had some interesting thoughts about the cycles of insomnia I’ve been having. Overall I was really put at ease with our conversation.

After finally finishing the 330+ question personality test, I met with my doctor who will be the head of my team. She is primarily a physiatrist with a fellowship in headache medicine, trained in both pediatric and adult medicine, rather than a neurologist. I love this because not only can she evaluate my body as a whole, she takes several different approaches including physical medicine, medication therapy, and holistic options! We had a long conversation and she went all the way back to mom’s pregnancy with me. She explained that what is happening in my body is all under the umbrella of a hyperactive central nervous system. There are lots of different names to give the different collections of symptoms I have but at the end of the day, her goal is to “reset” my CNS and the parts of my brain that have been telling me that my dog’s cold nose on my leg is painful and things of that sort.

We decided that the most efficient use of our time would be to do inpatient lidocaine infusions and I am scheduled to go back for a follow up July 24th to discuss expectations and make a plan, and then I will be admitted July 25th to the inpatient unit for the infusion. It will likely be a 5-7 day admission and after that we will discuss options like physical therapy for my neck and shoulder pain, continuing biofeedback, and what medication regimen I’ll be using. During the appointment she also gave me a prescription for a medication to address my POTS-like symptoms. Although I don’t meet the criteria for an official POTS diagnosis, she did want to address the fact that my body certainly leans that way and it is often a comorbid condition of NDPH. We discussed my Botox treatment at length and decided that if my Botox specialist in Indy is not willing to do anymore treatments after the second round, I will most likely transfer that care to her as well. That would mean a trip to Philadelphia every 84ish days which is certainly not ideal but, as mom and I decided, would be worth it if I were able to have a better quality of life. We’re just leaving that situation in God’s hands to work out!

After the appointment was over, mom and I headed back to the car and hit the road back west! We made it to somewhere in Ohio where we got a room for the night that was significantly more appealing than the previous night’s lodging and let Moxie romp around all over and had some good laughs watching her pounce on each of her toys. We stopped at a massive candle shop somewhere around New Castle, IN on Thursday that happened to be pet friendly so Moxie had a ball walking around shopping for a bit and we enjoyed some time out of the car. Little fluff ball got loads of attention thanks to her being SO gosh darn CUTE! On Thursday afternoon we pulled into moms driveway safe and sound and I picked up a very happy Sophie dog after a short rest on the couch. It was a whirlwind trip that has left me totally and completely drained but it was a worthwhile one! Now my goal is to make it through these next couple of months as best as I can and pray that the admission in July is successful! We are very thankful to God for safe travels, good insurance, sweet puppies, moms affinity for driving, and of course a positive outcome of this appointment!